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The complexities of grief

A few years before my dad died I sat up drinking with a girlfriend and found myself telling her – much to my surprise and with an honesty born out of alcohol – that I couldn’t imagine a world without him. He’s been gone five years now and in the intervening period I’ve had time to reflect on everything that, unknown to both of us then, lay ahead of dad and me.

My dad Arthur Kelly & his Second World War medals

He was a clever man. Intellectually curious in a way that mum, with her skittish Irish temperament, could never be. When I was very young he and I used to go on dusty bike rides through the Surrey lanes; and in the run up to the local horticultural show we’d hike up Box Hill to gather wild flowers, which I then had to name. I still have, tucked in the pages of Keble Martin’s Concise British Flora, the green felt-tipped list that earned me first prize.

Dad gave me so many tangible things. A love of France – he used to read a French novel a fortnight and joy, for him, was a very rare steak and a bottle of St Emilion, Premier Cru – a love of gardening and an ability to pick oneself up when things go wrong. When I bombed in my history A level he coached me through my retake with reserves of patience, kindness and tact that my daughter can tell you I’ll never have.

But then, in the last decade of his life his health started to fail. The writing was probably lightly fingered on the wall when my friend and I had our late-night conversation.

Dad suffered a series of minor strokes that rendered it impossible for him and mum to stay in the home where they’d lived for 30 years. They needed to sell, but mum – who with hindsight was already in the early stages of dementia – refused.

The traumatic story of how we had to trick her into leaving her beloved home and move into a more suitable flat I’ve already told here. What I didn’t know then was that it marked the beginning of a role reversal between me and dad and, for me, a recalibration of our relationship.

Mum never made it to the new flat. Her dementia, until then only occasionally hinted at, flared up at the shock of leaving her home and subsumed her overnight. She was hospitalised for six weeks before moving into a nursing home.

Guilt weighed on us all. It ate away at dad. Alone for the first time in over half a century, he never quite adjusted. As his health began to decline more rapidly, the focus of my life shifted towards his needs. I was never his carer; we lived too far away and I had a young daughter. Even had it been possible, I could never have done it. I’m ashamed to say I simply didn’t have it in me.

Dad’s body may have been failing but his brain was still sharp and, though he visited mum every day, he was adamant that he wasn’t ready for a nursing home. So instead, I put in place a coterie of local helpers and when, a year or so later, dad suffered a major stroke, I employed a wonderful carer who lived with him until he died.

Martha was our saviour, and in many ways for the final three years of dad’s life she became closer to the frail old man he’d become than any of his family.

Naturally none of this help came free – and dad was also paying mum’s nursing home costs. The capital he’d made through selling the family home soon dwindled to below the minimum required for social services help and I arranged to see a care manager. She advised me that, given dad’s condition – he was now immobile, confined to bed, no longer able to speak properly or eat (he was fed by a tube in his stomach) – he would be eligible for something called NHS continuing healthcare.

I’d never heard of it. Few have. It’s a form of state funding eligible to people who are very ill and subject to a rigorous assessment procedure which, had it been properly applied, I would readily have accepted. Sadly, in dad’s case (as in hundreds of others) the process proved inhumane and iniquitous.

My nine month struggle to secure these funds I’ve recounted before. I fought a phone, letter and email war of attrition with the NHS, enlisting the help of dad’s local MP and his solicitor to ensure that dad could, as he wanted, remain in his own home.

I won the battle, but at a price I didn’t immediately appreciate. I knew I was tired, worn out from my continuing battles with the NHS, constantly anxious about dad – not just his health but his rapidly diminishing bank account which meant that, unless we won the NHS funds, we’d soon have to sell his flat to pay for his care and put him in a nursing home.

I was exhausted, unable to go away for even a night or two (never mind abroad) without worrying that the next text or phone call might bring bad news. Many a call from Martha sent my heart racing only for me to discover that it related to a washing machine repair.

But the unknowing, never-ending fear took a greater toll. For with it came resentment. A word that dared not speak its name until a counsellor elicited it from me.

It was my husband who suggested – when I’d blown my top once too often for something petty – that I might need to talk things over with someone professional. He said he thought I was becoming very angry. Angry – me? I wasn’t angry!

But secretly, on the quiet, I often listen to my husband. And when I’d cooled down the following day I made a few enquiries and was astonished to discover that St Catherine’s hospice in Crawley, to which dad was now linked for his palliative care, offered counselling for relatives.

The weekly sessions proved invaluable and there was one that I will never forget. By the time it occurred I had been seeing my counsellor for several months. She usually said very little, merely a word here, a prompt there, as I babbled on.

A few days before this particular session I’d heard that we had finally – miraculously – won the NHS funds to enable dad to remain in his flat. I should have been elated. My husband and siblings were full of congratulations but I felt strangely flat.

I told my counsellor the good news and my unexpected reaction to it. For the first time since I’d been going to see her she started to talk. She said that my response was perfectly understandable. “They’ve conceded, you see, this enemy you’ve been fighting on behalf of your dad. They’ve finally admitted you’re right and your father is very ill – that he’s at death’s door. They’ve told you what you do and do not want to hear”.

I may have paraphrased, but that was the gist. I was conflicted. I was fighting, not just the NHS, but my own emotional battles. There was even a name for it: anticipatory grief. I did and didn’t want my dad to die. Saddened, traumatised even, by seeing the man who’d once been my hero – who’d served at the Siege of Tobruk, who’d taught me to swim and read and write, to whom I owed my education and virtually everything I’d ever achieved in my life – relegated to lying in bed, watching TV, a giant pair of earphones plonked over his cavernous skull, was too much for me. I wanted him to go. I also – and this was the difficult bit – wanted my life back.

As we talked all this over my counsellor gently teased out of me the unspoken fact that I had begun to resent my father’s lingering death. His insistence on staying in his own flat had placed a heavy burden of responsibility on me. Dad – my dear old dad who just a few years before I couldn’t contemplate a world without – was slowly dying before my eyes, and it was making my life hell.

Grief is often described as a wave. As I took in the implications of what we were saying, I collapsed. I quite literally fell off my chair as if I’d been struck by a tsunami. Tears flooded out of me and I sobbed. I could hear my own wails. It was an unstoppable surge of emotion that I’ve never felt before or since. Finally, drained, shaking, I pulled myself back onto my chair and wiped my face with the tissues I was being offered. And then, being English, I immediately apologised.

Dad died a few months later. I felt grief, of course, and I cried a little. But at his funeral my overriding emotion was one of relief that this wonderful man was at peace. I still find visiting his grave, where mum is now buried with him, profoundly comforting in ways I could never have foreseen.

Watching someone you love die slowly is very difficult. I know that now. And I know the complex, competing emotions that wrestle within you as it happens. The counsellor was a quiet, understated woman about whom I know nothing more than her wisdom, and that she shared it with me when I needed it most. For which I shall always be immeasurably grateful.

It’s not surprising that we both chose to refer to ‘Complexities’ when talking about death and grief. It IS complex… I experienced a range of emotions that caught me entirely by surprise. (http://wp.me/p4acro-R) This is such an eloquent and heartrending blog about your Dad and what he meant to you, as well as the impact his illness had on your life – thank you for sharing.

Thank you for sharing your personal experiences. There are still many things I struggle to come to terms with. We did everything we could to prolong my Dad’s life but we prolonged his suffering too without realising. I admire the truthful way you write about such difficult times.

Golly, they really are difficult times. Writing the piece brought it all back. With hindsight though I think that nothing is right or wrong, you simply do the best you can in the way you can at the time. Good luck Lynette.